My poor mum, hospice want to send her home

[helpforhospice]

Any help appreciated...I think my mum "isn't dying quickly enough" as she has been in the hospice for 2 weeks now. I don't know if I can contest that or what to do.

She is in a hospice with advanced cancer (terminal, liver etc)

She's on a syringe driver (pain, sickness) her mobility declined and her legs just don't seem to work anymore so she is bed bound. She eats only icecream, iced water and some soup sometimes but can't tolerate it at a temperature that she would ordinarily have eaten it at. She has a catheter and is pooing on a nappy pad in the bed.

She has proper mental capacity and can get all the test questions right for this, when she is not in delirium or asleep (which is 22+ hours per day I would say - she can only stay awake for a few mins at a time). She is in and out of delirium every day now and when she is in it, she doesn't know where she is, what is going on, she is hallucinating things that aren't there and she is frightened. When awake, briefly, she falls asleep mid sentence during very short conversations and her voice has become so quiet that you need to put your ear to her face to hear her.

Sometimes I think she is near death and she was admitted on that basis but they want to send her home. I don't know how we can possibly manage. We were absolutely destroyed trying to care for her before she went in to the hospice and she is afraid and doesn't want to go home. Her wishes were to die in the hospice. I don't know if she would even make the transport home, that in itself might stress her destroyed body to the point she dies. She would have to be belted to a trolley in an ambulance.

what should i do? is she not near to death?
all her life she has helped people and I don't know what to do for her :(

I should probably warn you that when my Mum stopped eating altogether so nothing but a few sips of water each day she still took another 3 1/2 weeks to die during which time no poo at all. She too had a driver with pain meds. The fact your Mum is eating anything means she will probably live another month or more. If she is still pooing food is going through her. I was told by cancer nurse about 3 weeks after all food ceased is common. My Mum was at home but I have 4 sisters and we sat with her day and night in shifts of 2 sisters at a time. It only worked because there were 5 sisters all willing to live at Mums to care for her. Our DC were most older by then so we left DH's to care for them. My Mum was told she had up to 3 months left but died after about 7 weeks. If you can't car for your Mum at home you must tell the hospice.

I’m sorry OP, unfortunately it does sound like she isn’t possibly going as fast as they had thought and if her symptoms are stable they will be looking to move her. I’d say you need to be firm on the fact you cannot care for her at home - it might not work though. Worth talking to McMillan as well, they are brilliant for this sort of thing.
if she did go home the meds/syringe driver etc would be handled by the community nursing team and care should be set up but it’s still a lot for you to do and manage.

So sorry, OP. You just have to stand your ground, I'm afraid.

This is awful to read.

I can understand the pressure hospice staffing/beds are under but kicking dying people out is a pretty shit way to manage it.

OP, I think you’ll just have to invoke your inner grey rock and stand firm. Don’t agree to anything- don’t sign any forms, don’t let them do any home assessments, just keep saying no. Practice saying some polite but firm sentences and memorise them- the more often you say them, the easier it will become.

I hope your Mum can be kept peaceful and pain free 💐

We were given spong on sticks to dip in water to put around our Mum's mouth. Ask for those and put a little Vaseline on her lips to stop them drying out.

My Dad died 2 weeks after entering hospice and he was eating and drinking when he was admitted.

My father in law was being cared for alone by a small care package and my mother in law who was 85 at the time. He ended up in a hospice when his cancer symptoms were out of control. At 16 days in he was in a similar condition and they tried to send him home but we said that my mother in law couldn't cope and was going to come home with us and that unless there was going to be someone in the house with him 24 hours a day it wasn't happening, they kept him in. I know there is a shortage but you can only fight your corner in this.